I was hoping someone might tell me whether the problems I have been having the last year could be lupus. I see my doctor again in two weeks, but in the meantime I am still feeling lousy and have some test results that confuse me.
I had two episodes last year of EXTREME fatigue (could not stay awake), very bad chills and aches. So bad that the first time it happened I went to the emergency room (where I fell asleep on a gurney in a noisy hallway, despite having slept for 3 straight days already!). Routine bloodwork was normal. Happened again, same thing. I did not have a malar rash, but I did have mouth sores, mainly on my tongue.
Anyway, when I saw my doctor about it she did run an ANA, which came back mildly positive. Also, I did test positive for RF, though it was right on the edge of what they consider significant (20). I have also had a couple of high platelet readings in the last year. Oh, and I do have Hashimoto's, been on replacement for years - though the levels fluctuate and I have to then adjust the dosage.
Okay, back to my doctor - she then ran Anti-Smith AB/RNP AB, Anti-Scleroderma and Anti-SSA and B tests - all came back normal.
My question is, could I still have lupus? What else could I have? I feel like my doctor and family think I am a nut, but I really have a lot of mental fog and joint pain that lingers. I feel like I've aged 20 years. It takes me as long to get out of a chair as my 68 year old mother! I can't sleep and the medications they have for that have terrible side effects...
My mom has fibro, and so I wonder if that is what this is, if it's not lupus. I am particularly interestied in knowing how many healthy people would have a positive ANA and the RF factor at the edge of positive. What else can I ask my doctor to do when I see her? Are there other tests that might show that I am not crazy (well, I am pretty crazy, but not enough to pretend to be ill)?
I am a single mom who wants to go to law school next year, but I'm scared that my health won't hold up and I'll end up in debt with no degree. Although I know that no one can know what the future will hold, I kind of feel I need as much information as possible about what's going on healthwise in order to make the most realistic plans for me and my children.
Any help would be very appreciated!
Hi, Stacia - unfortunately the ANA test doesn't really tell doctors much unless the results are really high - because about 5% of the general population will have a positive ANA without any underlying disease. A positive ANA can also be caused by many other diseases and disorders, including RA, thyroid disease, sjogren's syndrome, acute viral infections like mono or infuenza, and bacterial infections. There are also many medications which can cause a positive ANA. So, while most people with lupus will have a positive ANA, the majority of people with a positive ANA don't have lupus. That's why doctors look at the other antibody subsets (like the ones you mentioned), because a positive result on one of those tests has more diagnostic value than a positive ANA. This is a really confusing issue and a lot of doctors don't explain it very well.
The sores on the tongue and the extreme fatigue make me wonder about a Vitamin B-12 deficiency - do you know if you have ever been tested for this or other vitamin deficiencies?
I don't know about the statistics on "false-positive" RA tests. However, other indicators that doctors look for in diagnosing RA are an elevated sed rate, a low red blood cell count, and visible warmth and swelling in the joints. In later stages of the disease, there may be joint damage visible on x-rays - so x-rays of the joints that are the most painful might be a good next step. Unfortunately both lupus and RA can be tricky to diagnose, so it would be a good idea to see a rheumatologist who specializes in diagnosing autoimmune disorders.